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Old 03-14-2016, 06:54 PM   #81
Glenmeadowfarm
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Smile resting aggressively

Quote:
Originally Posted by radarmomma View Post
I am having a lot of trouble with balance, muscle sensation, brain fog, memory, exhaustion. I dont know what to do anymore
I tell my son I am "very very busy" because I am resting aggressively! You have to get flat, get gravity off your body and really rest it. Put pillows under anything where there is muscle tension until you can float like a jelly fish. Pool floating works great, too! I rebound faster if I truly, truly rest my muscles, my mind, my emotions. Have to have the quiet in the room, the lights not bothering me, truly restful. The other thing I have done with good results is just go to my primary care doctor and tell her I am having a flare. She prescribes what I call a "poison ivy pack", a ten day thing where you are tapering down, of prednisone. For me, it's often enough to just hit the reset button and pull me up.
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Old 07-31-2016, 06:03 PM   #82
Caprice
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Default Camptocormia?

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Originally Posted by Stellatum View Post
My story: I have Graves' disease, which has been in and out of remission for ten years. I take PTU when it flairs up. In the fall of 2009, my five youngest kids got H1N1. I took care of them for two weeks, but never got it myself. Towards the end of the two weeks, I inexplicably collapsed--I just became too weak to hold myself up, and ended up on the floor.

After that, I started losing my balance a few times a day while walking. I also noticed occasional weakness in my arms and legs. My neck became so weak that holding up my head was at times difficult.

By about January, I was having trouble walking at times. My main symptom is a weakness in the muscles of my side and back, which makes it hard to hold myself upright from the waist up. During a bad spell, usually late in the evening, I also have weak legs.

I am not diagnosed. My MRIs are normal. My blood tests are all normal--no antibodies that they can find. My SFEMG came back slightly abnormal, but not enough to diagnose me with MG. That's because the doctor only tested muscles in my legs, which are only slightly affected. He says he can't test the weak muscles in my sides and back because he doesn't have numbers for what's normal for those.

I am on Mestinon, 60mg every three hours while awake. Sometimes I think it helps, sometimes I don't. The last time I saw my neuro, I was in the middle of a very good spell, almost a remission, that lasted a month. Since I have no diagnosis, and I was doing OK, he didn't want to start me on immunosuppressants. Now that I am getting worse--having trouble walking at all for large parts of the day--I hope he will be willing to try something more than the Mestinon.

I would love to hear from anyone who has my atypical symptom: weakness in the sides and lower back that makes them tilt back and forth from the waist up when they try to walk.

Abby
Two years ago I was diagnosed with camptocormia. I bend forwards or sideways when I walk. There is not enough strength in my lower back muscles to hold up my spine. Walking is very difficult without two sticks. In fact I now use a mobility scooter. An MRI showed wasting of the para spinal muscles, but not everyone has this show up on the MRI. I think I have myasthenia as well now, though the tests are negative. Look up this rare disease, which goes hand in hand with autoimmune diseases. I hope you find an answer soon for your health problem.
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Old 08-24-2016, 08:18 PM   #83
goldiemom
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Default Hair color, nail polish causing my autoimmune disease

It was a drop of hair bleach on my leg that caused vitiligo all over my body, triggered the acute onset of primary biliary cirrhosis and hashimotos hypothyroidism as part of polyglandular dysfunction and now myasthenia gravis. Haircolor, nail polish, and cosmetics often contain capryllic acid, an ingredient considered natural as it comes from coconut oil, it is also called octynoic acid. Apparently in people who have a genetic predisposition, the capryllic acid triggers it, and the person either has or develops antibodies to the capryllic acid.

One drop of hair bleach bleached that one spot which despite many showers spread into a huge spot and then all over. I was diagnosed with autoimmune liver disease probably pbc, polyglandular dysfunction, and hypothyroidism within six months of the hair dye. The disease has progressed relentlessly with no remissions though mild although I never drink, take as few and as low dose of meds as I can, and eat healthy.

I also take lots of antioxidants and recommended vitamins. I had an abnormal single fiber emg which showed increased repetitive potentials in all my muscles that sounded like the purring of a cat and the tech called the doctor concerned I should be admitted to the hospital. The doc showed up and I was told then I either had myasthenia gravis so bad I shouldn't be upright or I was on some kind of drug and the doc decided the latter and threw me out of his office.

I also had ptosis but no diplopia then. Recently I developed diplopia, severe crushing facial pain and headaches along with numb paralyzed cheek, drooping mouth and eye. My vitiligo is worse on that side of my face so its like you can see the antibodies eating up the melanin in my skin and attacking that part of my face. Taking mestinon was like drinking cold water when you are extremely thirsty. I can feel it go through my body and my muscles stop aching and I feel better, till it wears off. Then I feel worse than before I took it. My symptoms are constant and have been once they start.
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Old 01-29-2017, 08:05 AM   #84
harleyearl
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Frown Mg second time around please help

26 years ago I've gone through the tyhemoctomy having much thymus glad removed to eliminate the effect of mysatinia gravis here I am 26 years later and finding myself going through it again my eye is completely closed now with no muscle at all I've been prescribed mestinon to elevate the effects of my eye muscle but to no avail they are making no difference at all catscan scheduled in few days to see if by any chance the thymus has regrow at a complete loss as what can be done if the thymus has or has not regrow my life is now at a standstill I cannot work or drive if there is anyone with some positive feedback I cold sure use it right now
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Old 01-29-2017, 03:10 PM   #85
vickypanda
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Default

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Originally Posted by Beannie View Post
I live in a major city and am going to a great medical center - that being said, they seem to be overly distressed that I have symptoms that don't fit together in a perfect neuro disease box. In addition to the weakness/fatigue, I have occasional fasciculations in my arms and legs as well as random muscle movement that I can't control. I also have sensory loss in my hands and feet (both temperature and pain).

I've been on the mestinon for 2 days and it really seems to help. However, it only seems to last for about 5-6 hours and it kills my stomach (does that improve with time?). I tried taking a Bentyl this afternoon to deal with the crazy cramping and it totally spaced me out. Of course, that was when the neuro called to talk! She wants to order the SFEMG and a lumbar puncture. The SFEMG to be done first. What is a SFEMG? How do they do it? I've had 3 EMG's already and two with the exercise/rest electrocute my hand and neck parts. Both times I had some positive results but they decided it was due to movement and not a real decrement.

I was tested for MuSK, but not for LEMS. It's only been a week and apparently it can take up to 2 weeks for it to come back. I get the sense from the docs I've seen that they NEED a positive test to help them know what to think. On the other hand, I am grateful for every negative test I get
When I started taking mestinon it gave me awful stomach cramps I worked out if I took it with milk and do not eat food half an hour before or after taking then I was ok also try and sit still after taking don't bend down too much etc if I do it gives me acid indigestion. It works for me hopefully it might help you a little too
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Old 01-29-2017, 03:13 PM   #86
vickypanda
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Quote:
Originally Posted by Beannie View Post
I live in a major city and am going to a great medical center - that being said, they seem to be overly distressed that I have symptoms that don't fit together in a perfect neuro disease box. In addition to the weakness/fatigue, I have occasional fasciculations in my arms and legs as well as random muscle movement that I can't control. I also have sensory loss in my hands and feet (both temperature and pain).

I've been on the mestinon for 2 days and it really seems to help. However, it only seems to last for about 5-6 hours and it kills my stomach (does that improve with time?). I tried taking a Bentyl this afternoon to deal with the crazy cramping and it totally spaced me out. Of course, that was when the neuro called to talk! She wants to order the SFEMG and a lumbar puncture. The SFEMG to be done first. What is a SFEMG? How do they do it? I've had 3 EMG's already and two with the exercise/rest electrocute my hand and neck parts. Both times I had some positive results but they decided it was due to movement and not a real decrement.

I was tested for MuSK, but not for LEMS. It's only been a week and apparently it can take up to 2 weeks for it to come back. I get the sense from the docs I've seen that they NEED a positive test to help them know what to think. On the other hand, I am grateful for every negative test I get
I find mestinon takes about half an hour to work and lasts 3 maybe 4 hours and some days it works better than others and sometimes when it wears out the fatigue hits you like a brick wall!!
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Old 03-28-2018, 12:02 PM   #87
Colessurfer
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Default Help does this mean it is spreading

I have been told by neurologist they are 99% sure I have MG, it started with double vision one week ago with drooping eyelid. I have a pain over left eye and have started to feel pains going down my neck. Does this mean it is spreading to other parts?....

Any advice really welcomed

Thanks
Dave
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Old 06-12-2018, 04:11 AM   #88
Louise Smith
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Originally Posted by Stellatum View Post
I'm updating my last post to this sticky "your diagnosis" thread. I see I'm the only one here, but I think this is a good thing to do. I have found it helpful to read other people's stories, and get a sense of the variety of ways MG can affect you.

I am now diagnosed. I had three antibodies blood tests, all negative, and three SFEMGs. The first was "borderline" and the second was mildly abnormal. But what gave me the diagnosis was the third one, which was a stimulated SFEMG on my face (even though I have only very mild facial symptoms). This was done by a specialist in Boston. I am going to start Imuran soon.

Abby
Best wishes and prayers go out to you.
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Old 07-14-2018, 08:58 PM   #89
LeeMac
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Default New to MG and How much variation is "normal"

Greetings,

I've recently been diagnosed with MG. Honestly my neurologist is still a bit skeptical because I tested negative for AChr antibodies and the symptoms came on after a bad concussion. However, my response to Mestinon is like night and day for resolving double vision, tension headaches, and overall fatigue.

My question is how much variability is "normal?" The double vision is fairly consistent but other muscles seem to vary greatly from day to day. Some days it's my legs, others my arms, and recently breathing which eventually passed. I understand it can vary, but I guess I expected that at least which muscles would be affected would be somewhat consistent.

Does anyone else experience MG this way or should I be considering asking the Dr. about other Dx?

Thanks, Lee
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Old 10-29-2018, 04:37 AM   #90
aielwen
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Default Diagnosed in 2015 at 42

Hi. I was diagnosed as a 42 yr old woman with Ocular Myasthenia Gravis (ptosis, diplopia) in September 2015 by a neuro-ophthalmologist. I was advised based on my history of symptoms that the OMG likely started a year or so before.

In June of 2016, my neurologist advised I had likely advanced to Generalized MG (fatigue, muscle weakness, albeit mild). This was confirmed with a positive SFEMG administered in November 2016 at Cedar Sinai. A prominent neurologist at Cedar Sinai asked me *before* the SFEMG "so when did you decide you had MG?". I told him I'd never heard of it before my OMG diagnosis by the neuro-ophthalmologist. I also had bloodwork done at Cedar Sinai which determined I am triple seronegative. I tested negative for the AChR, MuSK, and LRP4 antibodies and am therefore *not* a good candidate for a thymectomy. However, the clinician who administered the SFEMG test told me he knew I had MG within 5 minutes of starting the test and I do have an excellent response to Mestinon.

I have received some pressure from my care providers to start steroid therapy, but am dead-set against right now it because I fear the long-term side effects and my symptoms are still mild. My Mestinon protocol was originally 30mg (breakfast), 45mg (lunch), 45mg (supper), and 30mg (bedtime), but I've had to bump it up to 45mg for each dose this year. I use coffee and tea as "pump primers" for the mestinon, usually 1 cup (no more than 2) per day. I've found that if I take a biotin supplement at night and a B12 supplement in the morning, I have noticeably more energy during the day and less fatigue in the afternoon.

I cannot tolerate heat anymore (prior to my diagnosis, not an issue) and bright sunlight tires my eyes. I am functionally a vampire. I handle strenuous exercise well ONLY when it's *cold*. Mowing my postage stamp of a front lawn on a 75 degree morning now makes me feel as if I've run 5 miles. The hotter and sunnier it is, the more I am prone to fatigue and muscle weakness. My legs can feel like stumps and it's hard for me to hold things in my hands. But, I am able to ski and ice skate for hours. I also experience muscle pain in connection with hot days and any sort of physical activity. I've been told this isn't MG, but what else would it be since I've been tested for MS (negative)? It started with the Generalized MG.

An interesting fact about me is that I have been on continuous birth control (for an unrelated medical condition) since 2012 meaning I have no menstruation cycle. I wonder if this has something to do with why my MG is still mild as I understand menstruation can exacerbate MG symptoms for women.

I was exceptionally physically fit prior to my MG diagnosis and have been athletic my entire life. Now, I guess I'm just average, but I do wonder if this fitness has served me in a positive way with the MG. Finally, I have experienced 2 episodes in the last 2 years where I had difficulty seeing, talking, swallowing, walking, and breathing (felt like my chest was being squeezed). I didn't feel like I needed to go to the ER, but it was still frightening. These symptoms resolved after about an hour of complete cessation of physical activity. Since I've never experienced anything like this prior to my MG diagnosis, I am guessing these episodes were mild MG crises.

I'm sharing these personal details of my MG with the hope that my experience is helpful in some way to others.
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